The Guilt

This afternoon I decided to go out for a few minutes of respite. Certain stars need to align to make this possible, so I’m thankful when I get the opportunity. I had music and iced coffee in the car with me, along with my phone nearby in case I needed to return home. I was also joined by my ever-faithful companions: worry and guilt. This summer has been particularly difficult as a caregiver. Jason has been plagued by health issues since May, which resulted in four hospitalizations. It felt like my super vigilance was on duty every minute, never clocking out for a break. Because of his short-term memory issues, he’s especially vulnerable. This meant also being continually present during his hospital stays, even overnight. I have now been a full-time caregiver for 18 years, since his brain injury in early 2008. In the years before, I helped him through critical health issues off and on from the time we were married in 2000. Some seasons have been more stressful than others. The five months in hospitals following his brain injury, and those difficult first months after he came home. The two years of performing home peritoneal dialysis, followed by a year of taking him to in-center treatments. The complications after his kidney transplant, and lengthy recovery. But other seasons have been calm and peaceful, when his health was stable. Through it all, I became a clumsy juggler. Trying to ensure he was safe and well, while raising a son, while unsuccessfully keeping finances afloat, while maintaining a household, while working odd jobs for income, while caring for a parent, while mowing the yard. Over the years, I have been strongly encouraged by family and friends to take breaks, to take time for myself. Periodically, my sister gently forced me onto a plane or onto a train, while she stayed behind and took on my responsibilities along with her own. While I do understand the importance of the whole put-on-your-own-oxygen-mask-first concept, it’s often easier said than done. Some caregiving duties have felt uniquely mine. Also, I have unwittingly garnered each minuscule detail of his health, which makes it hard for me to relinquish that control, much to my own annoyance. And the emotions that accompany taking time for myself are complex. While he was in the hospital, I would rush home to get clean clothes and reassure the kitties before rushing back. I would rush down the elevator to get a necessary latte before rushing back to his room. I would rush to shower each morning in case a doctor made rounds at that exact time. It felt like four months in survival mode. We are both working on recovery. He continues to need daily monitoring and hands-on care, during a slow healing process that will take a few months yet. I am feeling the relief of returning to some sense of normalcy. Creating pockets of time for activities I enjoy. And fighting the guilt that goes along with that. Even though he certainly doesn't daydream about getting a coffee and exploring the thrift store, my mind refuses to be rational. I mourn for all he has lost over the years. Independence and the ease of carefree days.